Developing a patient decision aid to support genetic testing in MND

To develop a research-informed patient decision aid to support people with MND, and their families, make choices about genetic testing with health professionals.

AmcnPIC Edited

Lead Investigator: Dr Alisdair McNeill

Lead Institution: Sheffield Institute for Translational Neuroscience

MND Association Funding: £169,614

Funding dates: April 2022 - March 2025

About the project

Mutations in genes (changes in the biological instruction) can alter the function of the gene and cause MND. These mutations can be hereditary, so can be passed on from parents to children. People with MND are not offered genetic testing as often as they could be. There are many benefits to having genetic testing, including being eligible to take part in a clinical trial for the specific gene mutation. The aim of this project is to develop a decision aid which highlights the pros and cons of genetic testing, allowing people to have informed discussions with doctors and make a decision that they are comfortable with. This aid aims to support doctors, people with MND and families and help improve access to genetic testing.

What does this mean for people living with MND?

This decision aid will support doctors, people with MND and their families in choosing whether or not to have a genetic test. This will improve access to genetic testing in clinics and also support people who are considering having a MND genetic test as part of clinical trial of new treatments for MND.


Want to find out more about the project? Check out the resources below:


Genetics – Counselling & Testing - YouTube

Project code: 967-794